All week long, Patient Services Inc., has been celebrating National Patient Recognition Week. At PSI, we are honored to have had the opportunity to walk alongside some pretty incredible patients over the course of what is now thirty years, as they and their loved ones so courageously battle chronic illnesses and rare disease.
What Is National Patient Recognition Week?
According to personalizedcause.com, National Patient Recognition Week is also observed in February. This special date was founded by John O’Malley in 1995. National Patient Recognition Week promotes observance of health care patients, and it is rather unique since most health care awareness dates focus on health care personnel or specific health issues. National Patient Recognition Week revolves around patient satisfaction, and upon observing patient satisfaction, health care providers can use the time to consider ways in which they can enhance it. Personnel in the healthcare industry commit to patient care everyday, but with the arrival of the first week in February, they can make sure to go the extra mile and let patients know how important their well-being is.
With this, we would like to take a few moments to share with you some snapshots of the incredible people we get to work with every single day.
Patient Stories: Lisa’s Story
Meet Lisa, who at the age of 49, her lifelong mystery had finally been solved. It was just 10 months earlier that her twin sister was diagnosed with the very same rare disease. And although the discovery has brought closure to so many unanswered questions, it has also led to a thousand more.
“By the time I was diagnosed with Fabry, the symptoms were bad. It affected my heart and nerves. I couldn’t imagine how I was going to care for my children and myself. I didn’t want them to experience the constant pain and discomfort I had felt all my life.” Lisa tells us as she recalls when she was first diagnosed.
Taking a moment to look back at life through the lens of unanswered questions, Lisa reflected on what it was like growing up while not knowing what was going on with her.
“It was lonely, confusing, isolated, frustrating and restricted. I did not understand why I felt so bad and nobody knew what was wrong. Why gym activities, playing outside, skating or simply going for a walk on a nice summer day were so difficult for me? I missed out on a lot of things during my childhood due to the pain and fainting.”
And yet, it wouldn’t be until the age of 49 when Lisa would get her answer. What kept her going? One could only imagine the amount of times anyone suffering such plight would want to give up and throw in the towel. We asked Lisa what kept her going.
“Having a rare disease is physically, emotionally and mentally draining. Many times before the diagnoses I felt like what’s the use. I needed the pain to stop. No one knew what was wrong with me so it made me feel like I was crazy. I kept going because I had trust that God would not put more on me than I can bear. It wasn’t fair for me to give up on my family so I had to fight.”
You can read Lisa’s story here.
Patient Stories: Felix’s Story
Meet Felix. Born with Hemophilia and then given tainted blood in the 1980’s, Felix now also has Hepatitis C and HIV. For Felix and countless others who contracted the disease well before it’s discovery, it has been a long journey.
In 1985, shortly after Felix’s 11th birthday, his parents received notification that he was both Hepatitis C positive, and HIV positive (at the time that was like a death sentence). After sitting with several doctors, they decided not to even worry about his Hep C. After all HIV disease led to AIDS and AIDS led to death. He would “never” live long enough to worry about Hepatitis C or his liver, after all Hepatitis C takes years to really do any damage.
Yet, that was then. This is now.
Today, Felix is doing well. He has a great career, and he no longer has a need for PSI’s assistance that was able to help offset some costs with his premium when he needed it the most. That does not mean he has forgotten about others who just want to do their part, but need some assistance today.
Felix, thank you for sharing your story with us as well as the work you are doing to help others someday win. Because of you, for many, that someday is TODAY.
You can read Felix’s story here.
Patient Stories: Linda’s Story
Remember Lisa? Meet her twin-sister Linda, where after years of unanswered questions, enough was enough. For Linda and her family, the journey to find answers was a lifetime in the making. A lifetime filled with pain, sorrow, loneliness, and heartbreak. But it would not be until the age of 48 when an answer would finally come. For Linda, and her now Fabry diagnosis, it would not erase the pain from the past, but it now would set a course for the future. A passionate, patient advocate who spends time speaking out and educating people about Fabry, Linda is on mission.
“Since my diagnosis my life has changed drastically, having bi-weekly infusion treatments eases some of the symptoms and slows down the progression of my Fabry disease. It also gives me a greater peace of mind, knowing what I’m living with. I became, I guess what I’ll call, my “Family’s Advocate” as I now encourage each family member to be tested for Fabry and educate them about the disease and the effects it would have on their bodies.
Now on mission, Linda worked tirelessly to educate her entire family about Fabry as well as to see that they all were tested. Shockingly, yet heartbreakingly feared, Linda, after a brief pause, shared with us the results.“I encouraged and supported them until they were all sadly diagnosed with Fabry disease. That would include my mother, two brothers, my sister, a niece and a great niece (1-year-old).”
As Linda continues to fight Fabry, she has taken the fight beyond her own body and to the halls of universities and other events where she speaks out on the rare disease, symptoms, and what she has learned. In this, and one person at a time, Linda’s mission is that all should know.
You can read Linda’s story here.
Every Day Is Patient Recognition Day
These three stories are but just a few of countless others. PSI invites you to read through many more stories on our patient blog. You can read them here. Perhaps you have a story that you would like to share. If so, we would love to hear from you. Because at Patient Services Inc., every day is patient recognition day and every week is patient recognition week.
Learn more about you can share your story and advocate here.
You are the very reason we wake up each and every day and do what we get to do. Thank you for allowing us the honor to walk with you.